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Old 05-18-2013, 11:04 PM   #1
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Newbie Here Who Needs Help Figuring Things Out...

Hi all

I am 53 years old and have had Degenerative Disc Disease of L4-L5, L5-S1 with Osteoarthritis since the age of 27.

I have been on disability and on anti-inflammatory meds, skelaxin (a muscle relaxant) when needed for flare-ups with nerve involvement, and hydrcodone for pain which I have been taking when necessary for pain and sleep.

A few weeks ago I had what appeared to be some type of allergic reaction....my lower lip had swelled up and took some Benadryl and it went down. The next day my upper lip swelled significantly more than the lower, about the same time as previous day.

GP put me on Allegra and told me to stop all meds until we figured out what was going on and referred me to an allergist.

Long story short, the allergist began by doing lots of bloodwork and some abnormalities came back suggestive that I may have some type of autoimmune disorder and referred to see a rheumatologist.

Bloodwork shows the following:

Elevated ANA !:180 with nucleolar pattern.
Elevated C3 ~ 192
Elevated Complement Total (CH50 ~ >60

Rh, ESR and all allergy testing was all normal

Vitamin D Total was 28 and I was given a script to take 50,000 IU every week for 8 weeks and have that repeated.

As far as symptoms go, over past year I have had increased pain in back, knees, and feet as well as body. I am also very tired, feel as if I never get enough sleep and need a nap each day. If I do anything such as go out to do one errand I feel as if I need to have a nap right away.

Also feel as if I am more forgetful and "fogged"....thought it was the meds but since being off of them this persists.

Also....when I went to my GP yesterday to collect past lab tests when he examined me I had a fever of 101.5 despite being on Motrin around the clock for my pain.

When he listened to my chest, checked my ears, throat, and nose he didn't see anything warranting putting me on an antibiotic.

I took my temp today and it's been flucuating between 99.9 - 100.1

I was tested for Lymes in the past as well as by the allergist and this was negative.

In the past when 17 I had mono and had whooping cough about 12 years ago and got mono once again.

I do have a expiratory wheeze and cough here and there but the allergist and my GP didn't think it was anything.

So I will be on my way to the Rheumatologist as recommended by the allergist who pretty much has signed off on this being allergy related.

Scleroderma, Lupus, Sjorgens and Fibromyalgia were mentioned but I was told that the Rheumatologist would need to look further into things.

I have no rashes (other than a localized one on my bra line when my lips started swelling a few weeks ago)

I don't have any thickening of the skin but there is some tightness on the bottom of my feet that feels as if a rubberband is stretching when I flex my foot (a tightening feeling).

I also have had some slight numbness to the bottom of my feet and some pain like pins but not severe. Also some electrical tingling to my hands once in a while.

Also when off my usual meds I have pain in my left elbow and arm that wasn't there before.

I appreciate your reading this and would welcome any insight you can send my way in terms of figuring things out....

Thanks ~ Ivory

 
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Old 05-21-2013, 05:08 AM   #2
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Re: Newbie Here Who Needs Help Figuring Things Out...

Ivorygirl, hi & welcome. I'm just a patient, so please read in that light! On your first question, about complement levels, I believe that when these are abnormal in lupus, they tend to be low, not high. The exception may be C3 which can "spike" during the "reactive phase", which I think means when the immune response is just firing up.

ANA is a general test which can elevate in multiple autoimmunes & cancer, but also from just passing virus or infection, or to a family tendency. Where AI's like lupus, scleroderma, Sjogren's, etc. are suspected, additional tests are run for "ANA sbtypes", which are more specific autoantibodies that can provide clues as to which AI (if any) might be on the rise.

You write that your ANA was 1:180, which, to me, looked like *possibly* a typo? 1:80 (not 180) is a common result in one measuring system, wherein ANA is first reported at a titer of 1:40, then 1:80, then 1:160, then 1:320, etc. Doctors seem to suspect an AI at higher levels, say 1:320 or greater, but I suspect that varies quite a bit depending on other labs & symptoms.

In addition to classic lupus (SLE), there's another form called DILE = drug-induced lupus erythematosus. It tests out somewhat differently than SLE does: typical findings include anti-ss-DNA and anti-histone. Some common drugs have been implicated in DILE, e.g., cholesterol meds, meds for BP and arrhythmia, etc., but I'm not sure about skelaxin and hydrocodone... You could ask the rheumatologist, especially if you suspect any connection between either drug and your sudden & alarming lip swelling.

I think in Sjogren's, ANA tends to be very high, like 1:2560, for example.

Vitamin D often is low in people with lupus, but also in people who avoid sun for other reasons. I believe low levels can cause fatigue. (I avoid sun due to lupus. Mine has gone under 10 at times, and I felt lousy.)

I believe degenerative disc disease also can cause peripheral tingling and numbness.

I wouldn't know, with the labs & symptoms you describe, whether an AI is likely. The rheumatologist presumably will run more specific tests and take a complete lifetime history, so hopefully you'll know more soon. Let us know what happens next, OK? Best wishes, Vee (P.S. You could also check out the Lupus & Sjogren's boards, where you'll find more on how these conditions are diagnosed.)

 
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Old 05-21-2013, 05:58 PM   #3
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Re: Newbie Here Who Needs Help Figuring Things Out...

Thanks, VeeJ for your post......I of course don't expect a doctor's response here I had come here before with health issues and found a wealth of insight from others in helping me in terms of personal experiences to work with the doctor in figuring things out.

Yes the typo was mine....the ANA level was 1:160 not 1:180.....the Allergist explained to me with the level as well as the C3 being elevated, the CH50 also >60 and a nucleolar pattern in the ANA that there was something definitely flaring up.

I have to say that I can't help but think that I may have a mild asthma thing going on.......even on the Allegra when my hubby sprayed some Windex after the swelling of my lips, my eyes were burning severely and I couldn't breathe well having to get some fresh air.

Today when my daughter came down with perfume on and the breeze was blowing in our house I again had some diffculty breathing.

My IgE levels were up despite all the allergy testing coming back negative....

Also.....I switched from Motrin to Aleve yesterday at my GP's suggestion to get better pain relief for my DDD and osteo......today for the first time I was able to get around without too much pain.

However, once the Aleve wore off I could feel the inflammation in my back and joints returning, I got a slight headache (which has been occurring more often since the lips started swelling up) and when I checked my temp it was 101.5.

The lowest my temp has been is 99.1 throughout the day even on the Motirn or Aleve.

So this is something new.....

When you mentioned the cancer I was a little concerned because 3 years ago my mom passed from biliary duct cancer.

I had an abnormality in my CAT scan and MRI showing a dialated bile duct that they were concerned about......9 years prior I had a similar finding in a CAT scan and since there were no changes they told me that it was nothing to worry about.

They said that they would watch my bloodwork.....my liver enzymes have always been bit elevated due to a fatty liver but in my bloodwork this time they were more elevated (the bloodwork wasn't fasting like in the past so that may have something to do with it)

So that's in the back of my mind to keep in check as well.

Yes, the Vit D deficiency can cause fatigue so I am hoping that once we get that up that I will be feeling better in that regard.

I do appreciate all that you have shared with me......it does make me feel better in the sense that this could all be due to a virus or something and that with further testing from the Rheumy I will be able to figure it out and put my mind to ease.

However, the first appt available isn't until July 17th

Do you think this is something that needs to be evaluated sooner??? I was contemplating calling my GP and the Allergist to see if they could push things along but didn't want to do that unless it is something that should be evaluated when I am symptomatic.

If my pain wasn't improved I was going to insist I be seen sooner since my GP doesn't want to make any med changes until the Rheumy has a say in that.

Thanks again and will keep you posted on what happens.

~ Ivory

Last edited by Ivorygirl; 05-21-2013 at 09:14 PM.

 
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Old 05-21-2013, 07:23 PM   #4
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Re: Newbie Here Who Needs Help Figuring Things Out...

Ivory, first, I'm sorry you lost your mom, it's so profund a loss.

I believe complement levels also can elevate due to bacterial infection. Could you have one brewing, a UTI, sinus, or something?

Assignment of ANA pattern is done by a lab tech, so it's rather subjective, more like an art than a science, and different labs could read the same sample differently.

I understand your doctor's NOT changing meds before you see the rheumatologist. It's better that way, allows him to see you "as is". (I avoided meds, when possible, while seeking answers.)

Not sure where you live, but where I live (northeast), the pollen has been truly horrible this spring. Even people who usually don't react, have.

As far as seeing rheum sooner: although your ANA was elevated, I don't think it's crazy high. If you didn't have lab abnormalities* other than the ones you mentioned AND you continue to feel more or less the same, you're likely to be able to wait out your July appt. But if you start feeling worse, that's another matter---I'd contact my PCP if that happens, then beg to see the rheum sooner if your PCP can't find anything on try #2. (* I'm curious, was urinalysis done?)

Has your lip swollen up again? Did drug printouts for skelaxin and hydrocodone mention that as a possibility? Or did you eat anything that's a trigger for some people, like shellfish? Hmmmmm... No wonder you're wondering, I'd wonder, too! Keep us posted, OK? Hugs, Vee

 
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Old 05-21-2013, 08:09 PM   #5
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Re: Newbie Here Who Needs Help Figuring Things Out...

P.S. If you don't have "long form" drug info for skelaxin & hydrocodone, you could ask your pharmacist. Swollen eyes, lips, tongue, etc. may actually be possible with both.

Also, looks like you can't mix one of those---I forget which already, gaaaaa!---with antihistamines or allergy meds, because antihistamines (etc.) magnify the other drug's effect on your CNS. (I took that to mean wooziness or worse.)

My hubby takes OTC's very freely. His top boo-boo: lots of Sudafed on top of his chronic BPH. Not pretty. But the ER doctors did fix him up pretty quickly.

 
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Old 05-28-2013, 10:15 AM   #6
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Re: Newbie Here Who Needs Help Figuring Things Out...

Quote:
Originally Posted by VeeJ View Post
Ivory, first, I'm sorry you lost your mom, it's so profund a loss.

I believe complement levels also can elevate due to bacterial infection. Could you have one brewing, a UTI, sinus, or something?.......... your PCP can't find anything on try #2. (* I'm curious, was urinalysis done?)
My PCP listened to my lungs, checked my throat, ears, nose and didn't see anything warranting an infection.

I have had UTI's in the past and know the signs so no signs of that.

I am still running fevers......99.1-101.4 throughout the day.

I tried upping the Motrin to 800mgs 4x/day which didn't help in regard to pain or fever and did as my PCP suggested switching to Aleve 2-3 caps per day with much better relief.

But still I am running the temps.....I find that by 10-12 hours after I take my Aleve that I have a "flare up" of back and joints really hurting with a dull headache as well. And that's when my temp is the highest and I take another Aleve at that time.

Also.....I have noticed since I stopped my Piroxicam and was off meds and on Aleve that my left upper arm and elbow are having pain, when in the past that never happened.

Another new thing is yesterday I thought I had the skin of beans stuck between my lower teeth and inner lip and it was whitish skin peeling off and my entire tongue was coated white.

This morning that continues......What's with that???

Quote:
Originally Posted by VeeJ View Post
Has your lip swollen up again? Did drug printouts for skelaxin and hydrocodone mention that as a possibility? Or did you eat anything that's a trigger for some people, like shellfish? Hmmmmm... No wonder you're wondering, I'd wonder, too! Keep us posted, OK? Hugs, Vee
No further swelling of lips since off the meds and taking the Allegra.

I looked up all the meds and the only one which could have the swelling of the lips would be the Piroxicam (anti-inflammatory) but since it's in the same NSAID class as Motrin and Aleve and I haven't have any reactions to them I am doubting that it's med related.

As far as foods, nothing new there, I have wracked my brain trying to think of anything new and there's nothing.

I have had two reactions to aerosols....the Windex and then my daughter's perfume when she oversprayed herself and was close to me.

So part of me wonders if there may be a mild asthma going on but when I asked the allergist about that she again stressed how this is a problem that the rheumy needs to look into.

I will wait but am wondering what the white coated tongue is all about.

I don't think it's thrush since it's not painful just yucky looking.

I was wondering if it can be from the Vit D prescription I am taking since it's a large amount (50,000 U once a week for 8 weeks)

Thanks Vee for all your help....I so appreciate it.

~ Ivory

 
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Old 05-29-2013, 06:11 PM   #7
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Re: Newbie Here Who Needs Help Figuring Things Out...

Ivory, despite what your allergist said, I still wonder if infection is a possibility, in that your ANA is low (1:80) and your complements are elevated. But that's why we have rheumatologists: to sort thru the various reasons ANA elevates. (I just had a skin staph infection that I didn't recognize despite fever & red skin. This was a very big DUH on my part.)

I'd expect lots of specific auto-antibody tests, those "ANA subtypes" I mentioned. For example: anti-ds-DNA, anti-Sm, anti-RNP, anti-Ro, anti-La, antiphospholipid, etc. ("etc" because there are many). And even the presence of one or more of such auto-antibodies alone doesn't create a diagnosis. That's because the connective tissue conditions have diagnostic criteria, only SOME of which are auto-antibody readings.

Re: your increasing joint pain, I believe there are more than 100 kinds of arthritis, but that of those, only a handful are autoimmune, meaning feature auto-antibodies.

Waiting is horrible, I agree. If you're the reading type, you could visit your library. Before seeing a new rheumatologist, I borrowed lupus books. Oddly, instead of making me more nervous, I could sense that I had some symptoms but not the worst possible, so I went in with a can-do attitude.

I hope the rheumatologist has a theory about your lip swelling; that would be interesting, too! Keep us posted. Thinking of you, Vee (P.S. I don't know what your white tongue might mean, sorry.)

 
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Old 05-29-2013, 07:46 PM   #8
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Re: Newbie Here Who Needs Help Figuring Things Out...

Hi Vee

Thanks again for your insight......

My ANA was 1:160 (still considered on the low side from what I read )

I am really don't think we have Lupus and Scleroderma going on or an infection because other than my joint pain, back pain, temp and fatigue I don't have any other symptoms......but like you, I think I may have some type of systemic arthritic thing going on.

I have found over the past year or two that my pain is deep down in the bone.....very painful especially in the winter months in which I have to wrap myself in a heating blanket for relief.

I hadn't had any bloodwork to correlate with these changes so I suspect that my ANA and other bloodwork may have been elevated prior to my lip swelling.

I may have been running fevers too because to be honest, I was surprised when my GP told me I had a fever because I didn't feel as if I had one other than the pain I was experiencing in my joints and back.

I also innately think that I may possibly have some mild asthma going on......would that bring on a fever???

Reason is, I have been having an expiratory wheeze for past few years as well.....and with the recent reaction to windex and perfume......I just am not convinced that this isn't allergy related. I brought this up with the allergist who didn't seem to agree.

I did read since that with asthma the ANA can be elevated as well as the C3 and IgE.....

I am not overly worried and like you describe would like to spend this time researching and informing myself so that I can figure this all out and brainstorm it out with the rheumy when we meet.

In my reading about autoimmune disorders, it isn't easy to diagnose any particular thing despite the testing so being in tune with what is going on in my body and effectively relaying that off to the rheumy will help to pinpoint a diagnosis.

I also thought that I may have fibro because of my fatigue but understand that it's difficult to diagnose as well.

Another thing I would like to run by you.....I have Medicare as my primary insurance and the Rheumy I am seeing doesn't accept my secondary insurance.

I was told that Medicare covers 80%.....I also have an open Workmen's Comp Case since my injury to my back occurred on the job 26 years ago and I didn't want to accept a lump sum feeling that I may need surgery in the future.

I have DDD and osteoarthritis and any meds related to my back or secondary illnesses stemming from my back, go through Workmen's Comp.

I have never been to a Rheumy....this one came highly recommended but I don't want to be facing all sorts of medical expenses (I never had a doctor who didn't accept my secondary insurance)

Don't know what to expect in terms of medical expenses.....if there are MRI's and diagnostic testing ordered etc will they be covered if ordered by this doc by my secondary??? I'm worried because 20% can add up with some of this tesing.

Wondering if I should consider another Rheumy.....but wanted to go to one that is good......sorry for the rambling but don't know what's going to be involved here and how it works when it comes to diagnostic testing if the doctor ordering it doesn't accept the secondary insurance.

Thanks for your patience with my questions.....

~ Ivory

 
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Old 05-30-2013, 04:11 AM   #9
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Re: Newbie Here Who Needs Help Figuring Things Out...

Ivory, re: having Medicare as primary, I'd call the doctor's office to see if he accepts the Medicare reimbursement as "full payment" for HIS charges (office visit, new patient, etc.), meaning doesn't bill you the differential amount.

And you'll want to ask that same question for ALL services he might order from OTHER PROVIDERS, like (1) standard and specialized blood tests he sends to outside labs, (2) other diagnostic tests (X-rays and the like) he might want a hospital or independent out-patient facility to perform.

You're smart to think of this now. The lab my rheumatologist uses bills > $1,500 for my regularly done blood labs and urinalysis---and I'm a milder & stable patient! Good luck, Vee

 
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